In this co-authored article, one contributor presents a case story from an interview with a social worker in Slovenia, while five others offer commentaries on ethical aspects of the case. The story comes from a practitioner working with a pregnant young woman, arranging for adoption following birth. The social worker respected the woman’s request to keep her identity secret, hence not registering her in the institutional records. However, whilst the social worker was on holiday, the baby was born and anonymity (...) was not maintained. Commentaries 1 and 2 evaluate the story through its form: as a narrative with a tempo and plot; and as a performance that creates its narrator as an agent with an ethical identity. Commentary 3 uses a normative moral philosophical framework (virtue ethics), while the final two commentaries take a more grounded approach. Commentary 4 views the social worker as using discretion to act in a space void of rules (there is no provision for anonymous birth), whereas Commentary 5 foregrounds the Slovenian code of ethics as a source of ethical standards unremarked upon by the social worker. The article ends with reflections on the value of exploring multiple perspectives and engaging in dialogue in developing ethical understandings and actions. (shrink)

Background: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. Objectives: To explore the moral challenges of living with a renal disease. Research design: A case study based on qualitative research. We used Walker’s ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new perspective on moral issues. Participants and research context: One case (...) was chosen from 20 qualitative interviews with renal patients in the Netherlands. Ethical considerations: Several actions have been taken to ensure the informed consent, privacy, anonymity and confidentiality of the patient in this article. More details are offered in this article. The study has been conducted in line with the recommendations of the Medical Ethical Committee of the VU Medical Center. Findings: A renal disease can force people to change their identity, relationships, values and responsibilities. The case study illustrates the moral challenges confronting renal patients. Discussion and conclusion:: Moral issues can be raised by the changes to identities, relationships, values and responsibilities caused by renal disease. Support services for renal patients and their relatives should pay more attention to these issues in order to promote self-management. (shrink)

Narrative ethics taps into an inherent human need to tell our own stories centred on our own moral values and to have those stories heard and acknowledged. However, not everyone’s words are afforded equal power. The use of narrative ethics in bioethical decision-making is problematized by a disparity in whose stories are told, whose stories are heard, and whose stories are believed. Here, I conduct an analysis of narrative ethics through a critical theory lens to show how entrenched patterns of (...) narrative neglect in medicine are harming not only our capacity to make use of narrative ethics but also our capacity to deliver effective healthcare. To illustrate this point, I use three examples where the patient’s gender affects how their stories unfold: autism, weight, and pain management. From these, I argue that the use of narrative ethics without the application of a critical theory lens risks the exacerbation of what Miranda Fricker refers to as “testimonial injustice,” the prima facie harm experienced by individuals whose credibility is undermined by others’ prejudices. Finally, I suggest that narrative ethics can be a powerful tool for mitigating oppressive practices in medicine if we couple it with critical analysis that enables us to understand the power dynamics at play in storytelling. (shrink)

Since antiquity, doctors have employed case reports as an essential and ongoing part in communicating information about patients and their diseases to their colleagues and, at times, to the wider, nonmedical world. Given how useful case reports have been, a legitimate and persuasive argument could be made to retain them in modern medical literature. But there is an emerging problem with case reports. As the ability to publish and disseminate the information contained in them has become easier, the capacity for (...) individuals to maintain their privacy and restrict access to their personal information has become more strained, and it has become more difficult for doctors who tell clinical stories to respect the confidentiality of their patients while still communicating the pertinent details of their cases. Does the acknowledged educational and scientific value of (some) case reports justify the threat to personal privacy that may be entailed by the format itself? (shrink)

The current empirical research and normative arguments on physician-assisted dying in the Netherlands seem insufficient to provide ethical guidance to general practitioners in the practice of PAD, due to a gap between the evidence and arguments on the one hand and the uncertainties and complexities as found in everyday practice on the other. This paper addresses the problems of current ethical arguments and empirical research and how both seem to be profoundly influenced by the Dutch legislative framework on PAD and (...) a certain view on ethics. Furthermore, the paper elaborates on how other approaches to empirical research in bioethics, such as found in the broad field of narrative research, could supplement the empirical and ethical evaluation of PAD in the Netherlands. This paper also addresses the challenging question of how empirical data—in this case narratives—relate to normativity. The paper is written in the form of a personal narrative of the author, a young Dutch general practitioner and researcher in bioethics. This style is intentionally chosen, to illustrate how work context and professional background influence the observations one makes and the questions one may ask about the topic of PAD. In addition, by using this style, this paper not only gives a different perspective on a much-contested bioethical issue, but also on the challenges faced when a physician–bioethicist has to navigate different disciplinary fields and epistemological paradigms, especially since the ‘empirical turn’ in bioethics. (shrink)

Ethics is often viewed as the elaboration of and compliance to norms, a.k.a. as the deductive model of ethics. This is well illustrated by the mainstream development of codes of ethics and ethics committees in the healthcare setting and beyond. Drawing upon a recent synthesis of pragmatist insights on the nature of ethics as well as contemporary scholarship on human flourishing, I explain how ethics is not primarily about the compliance of experience and agency to preset norms but about liberation (...) and empowerment within a process of existential meaning-making. This point is made in the context of two important tasks of ethics: (1) understanding moral problems and (2) providing guidance for solving such problems. (shrink)

The aim of this paper is to analyze an Intensive Care Unit case that required ethics consultation at a University Hospital in Northern Italy. After the case was resolved, a retrospective ethical analysis was performed by four clinical ethicists who work in different healthcare contexts. Each ethicist used a different method to analyze the case; the four general approaches provide insight into how these ethicists conduct ethics consultations at their respective hospitals. Concluding remarks examine the similarities and differences among the (...) various approaches and offer a reflection concerning the possibility of a shared resolution to the case. The authors’ efforts to come to a tentative consensus may serve as an example for professionals working in medical contexts that reflect an increasing pluralism of values. This article aims to respond to some of these concerns by illustrating how different methods in clinical ethics would be used when considering a real case. The goal is not to establish the best model on a theoretical level, but to learn from actual practice in order to see if there are common elements in the different methods, and to validate their pertinence to clinical ethics consultation. (shrink)

The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health information is indispensable for advancing science, medical care and public (...) health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur’s ‘‘little ethics’’, based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur’s ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information. (shrink)

When clinical ethics committee members discuss a complex ethical dilemma, what use do they have for normative ethical theories? Members without training in ethical theory may still contribute to a pointed and nuanced analysis. Nonetheless, the knowledge and use of ethical theories can play four important roles: aiding in the initial awareness and identification of the moral challenges, assisting in the analysis and argumentation, contributing to a sound process and dialogue, and inspiring an attitude of reflexivity. These four roles of (...) ethical theory in clinical ethics consultation are described and their significance highlighted, while an example case is used as an illustration throughout. (shrink)

This paper responds to a proposal for an intersectional approach to the clinical encounter between patient and medical provider. We agree that an intersectional framework offers new insights and information in the clinical encounter. Intersectionality involves awareness of the physician-patient dynamic, and understanding the various privileges and disadvantages of all parties involved, at a micro and macroscopic level. Yet, this analysis alone is insufficient to aid in the clinical encounter and risks harm. We worry about a clinician making assumptions about (...) her patient’s race, gender, economic status, and how these influence the patient’s own views of her life and health. We argue that a narrative supplement is a necessary element of intersectional clinical encounters. Prioritizing patient narrative curtails assumptions, builds trust, and improves care. (shrink)

Applied ethicists’ interest in narratives and narratives ethics has grown steadily. Some thinkers position narratives as supplements to ethics, while others see narratives as new form of ethics comparable to virtue or deontological ethics. In this paper, I analyze some of the main ethical claims being made on behalf of business and literary narratives from the perspective of Aristotelian virtue ethics. I argue that, while narratives can significantly contribute to the development of our character, to a better grasp of virtues (...) and vices, and to a clarification of a virtue ethics framework, this contribution is highly nuanced. In particular, Aristotelian virtue ethics enable us to sensibly and helpfully distinguish the ethical value of _narratives within business ethics_ from _narrative business ethics _per se. This paper has three parts. Part One offers a provisional definition of narrative and sketches some of the large claims that literary critics, philosophers, theologians, and others have made for narratives’ relevance to and value for ethics. In Part Two, using narratives drawn from business and literature, I take up each of these claims in turn and examine whether the claim makes sense and is compelling from an Aristotelian virtue ethics perspective. Part Three gathers together the threads of the arguments in Part Two to specify the modest, but nonetheless significant, legitimate roles narratives might play within Aristotle’s virtue ethics. I also point to some limitations inherent in an Aristotelian critique of narrative ethics and suggest some questions for future research. (shrink)

In this paper, for the benefit of reflection processes in clinical and in local, regional, and national priority-setting, we aim to develop an ethical theoretical framework that includes both ethical principles and medium-range narratives. We present our suggestion in the particular case of having to choose between treatment interventions for attention deficit hyperactivity disorder (ADHD) and treatment interventions for other conditions or diseases, under circumstances of scarcity. In order to arrive at our model, we compare two distinct ethical approaches: a (...) generalist (principles) approach and a particularist (narratives) approach. Our focus is on Sweden, because in Sweden prioritization in healthcare is uniquely governmentally regulated by the “ethics platform.” We will present a (fictional) scenario to analyse the strengths and weaknesses of the generalist principled perspective of the ethics platform and the particularist perspective of narrative ethics. We will suggest an alternative (moderately particularist) approach to prioritization, which we dub a “principles plus medium-range narratives” approach. Notwithstanding the undeniably central role of principles in distributive justice, we claim that medium-range narratives concerning individuals or groups who stand to benefit or lose from ADHD prioritization practices should also be read or listened to and taken into account at all levels of priority-setting. These narratives are expected to ethically optimize clinical priority-setting, as well as that undertaken at local, regional, and national levels. (shrink)

The literature on rational suicide (RS) holds that if a rational person wishes to suicide under circumstances deemed rational, there is no moral reason to prohibit a person from suiciding. There are forty years of literature dedicated to establishing what rational suicide is and demonstrating its moral permissibility. What is shocking is that in this literature, almost no attempts are made to include the perspectives of mental health users. Drawing from the work of Hilde Lindemann, I argue that ignoring of (...) the perspectives of mental health users constitutes a form of erasure and oppression that must be rectified. (shrink)

Background:Ethics consultation is the traditional way of resolving challenging ethical questions raised about patient care in the United States. Little research has been published on the resolution process used during ethics consultations and on how this experience affects healthcare professionals who participate in them.Objectives:The purpose of this qualitative research was to uncover the basic process that occurs in consultation services through study of the perceptions of healthcare professionals.Design and Method:The researchers in this study used a constructivist grounded theory approach that (...) represents how one group of professionals experienced ethics consultations in their hospital in the United States.Results:The results were sufficient to develop an initial theory that has been named after the core concept: Moving It Along. Three process stages emerged from data interpretation: moral questioning, seeing the big picture, and coming together. It is hoped that this initial work stimulates additional research in describing and understanding the complex social process that occurs for healthcare professionals as they address the difficult moral issues that arise in clinical practice. (shrink)

As artificial intelligence (AI) thrives and propagates through modern life, a key question to ask is how to include humans in future AI? Despite human involvement at every stage of the production process from conception and design through to implementation, modern AI is still often criticized for its “black box” characteristics. Sometimes, we do not know what really goes on inside or how and why certain conclusions are met. Future AI will face many dilemmas and ethical issues unforeseen by their (...) creators beyond those commonly discussed (e.g., trolley problems and variants of it) and to which solutions cannot be hard-coded and are often still up for debate. Given the sensitivity of such social and ethical dilemmas and the implications of these for human society at large, when and if our AI make the “wrong” choice we need to understand how they got there in order to make corrections and prevent recurrences. This is particularly true in situations where human livelihoods are at stake (e.g., health, well-being, finance, law) or when major individual or household decisions are taken. Doing so requires opening up the “black box” of AI; especially as they act, interact, and adapt in a human world and how they interact with other AI in this world. In this article, we argue for the application of cognitive architectures for ethical AI. In particular, for their potential contributions to AI transparency, explainability, and accountability. We need to understand how our AI get to the solutions they do, and we should seek to do this on a deeper level in terms of the machine-equivalents of motivations, attitudes, values, and so on. The path to future AI is long and winding but it could arrive faster than we think. In order to harness the positive potential outcomes of AI for humans and society (and avoid the negatives), we need to understand AI more fully in the first place and we expect this will simultaneously contribute towards greater understanding of their human counterparts also. (shrink)

Volume 19, Issue 6, June 2019, Page W3-W4.

Supporting the view that ethics can be taught, this paper will explore the frequent lack of a philosophical foundation in scientific training and its impact on a course on ‘Science and ethics.’ The incidence of cases of misconduct by scientists engaged in basic research led the United States to establish the Office of Research Integrity. Their publication, “Introduction to the Responsible Conduct of Research” covers the ethical conduct of research and defines misconduct as fabrication, falsification and plagiarism. Concern for breach (...) of public trust with repercussions in scientific funding has led to mandates courses in ethics for students training for scientific research careers. Having concentrated their course work in laboratory-based science, these students have less familiarity with philosophy and consequently struggle with the ethical reasoning aspects of a course in science and ethics. Discovery of a therapeutic drug or device opens a complex web of regulations by Food and Drug Administration for the ethical use of human subjects. Again the ethical system is one of rules and conduct based norms without foundational philosophical support for the ethical principles used in the guidelines. Rules of law reflect corrective action. Engaging students in case studies helps alert them to potential ethical dilemmas and invites them to explore why one action is right, good or better than an alternative. Narrative ethics provides a human presence to competing and compelling claims, the intersection of which is the ethical issue and concept. Dissection narratives help students explore how ethics can be taught and learned in a pluralistic society and remain relevant to the field of expertise they have chosen. The challenge lies in finding the best methods for teaching ethics in a particular discipline. Is there a code of ethics that applies crossculturally and across disciplines? Early and often should be the mantra of teaching ethics throughout the development of the individual and emergent professional. (shrink)